Health advocates have called for strong emphasis to be placed on policy framework which will enhance the quality of life for Nigerians living with chronic conditions. They reinforced that this move will promote the well-being of the individuals and overall perception of inclusivity in the society.
The call was made at a 2-day event organized by a health nonprofit, Sickle Cell Advocacy and Management Initiative (SAMI). The event called Toyin Adesola Leadership Lectures is in celebration of the Founder of the organization, Toyin Adesola who recently turned 60 and her journey is a masterclass in turning pain into purpose and limitations into leadership.
A board member of the organization and Permanent Secretary of Lagos Health District 6, Dr. Abimbola Mabogunje who gave the opening remarks said: ‘Chronic illnesses affect millions across the world, doesn’t respect geography but you can choose what you will do about it. We see extraordinary strength which is exemplified by Toyin Adesola and families standing strong through it all.’
The keynote speaker and Executive Director of Cerebral Palsy Center, Nonye Nweke said that the theme of the conference, ‘Voices, Victory and Vision’ is so apt because it tasks people winning through their chronic conditions to speak for others. She reflected: ‘Advocacy is using your voice to speak for those who may not be able to speak for themselves.’
‘My daughter is now 19 years old when they told me she would die at 5 months. The victory is not just for the sake of it. It is for a mission, it is for you to speak for others.’
The event which was vociferous in its call for social inclusion and policy advocacy had a great lineup of conference speakers drawn from various sectors. These include consultant haematologist, NextHaematology Medicare, Dr. Folashade Popoola; consultant paediatric haemato-oncologist, LUTH, Dr. ‘Seye Akinsete; Founder, Ignite Sickle Cell Academy, Kemi Oguntimehin; genetic counselor, Peter Osikoya; fashion designer, Basirat Adigun; physiotherapist, Kelvin Adah; Founder, The Let Cerebral Palsy Kids Learn Foundation, Tobiloba Ajayi; data analyst, Sandra Onwuzulike; CEO, Amuludun catering service, Olorunrinu Sadiq; and Founder, Noah’s Ark Foundation for Sickle Cell, Osasele Esangbedo.
Speaking on behalf of the organization, Communications Officer, Sickle Cell Advocacy and Management Initiative (SAMI), Abayomi Oyelami highlighted the towering effort of the Founder of the organization, Toyin Adesola. ‘Living with Sickle Cell Disorder for 60 years, she refused to be defined by her condition. Instead, she chose to define her life by courage, creativity, and contribution.Her leadership has been recognized with multiple awards, including the UNESCO Runway Jazz Humanitarian Award. She has graced national television, radio, and print media – spreading awareness, breaking stigma, and telling a story that brings hope.’
The organization’s spokesperson who also lives with sickle cell added: ‘Policies will outlast people. Policies are the factors that will ensure that irrespective of your social status, you can be assured of the essentials of life. Persons living with sickle cell, cerebral palsy, and other lifelong conditions require policies that will make their lives better.’
‘We are talking about having a comprehensive health insurance policy for which everyone can live a good life. We are talking about ensuring that as soon as children enter primary school, they can know their genotype and blood group and be guided adequately. We are talking about newborn screening to detect some health challenges early. We are amplifying our voices to get better health outcomes for people living with chronic conditions. That’s the essence of this program’, Oyelami concluded.